October 2005

 Vol. III, Issue #22

Ribbon          Bergen CFS Support Group Newsletter

Meeting Report

Our guest speaker on Sunday October 18 was Tracey Gold, from The Institute of Neurological Care in Englewood Cliffs, NJ - the office of Dr. Nancy Mueller.  Neurology is the diagnosis and treatment of diseases and disorders of the brain, nervous system and spinal cord through non-surgical means. Tracey discussed the challenge of breaking the cycle of chronic pain and stress to lower the pain threshold.  Dr. Mueller and her staff of experienced professionals treat patients with CFS, Lyme disease, migraines, nerve and disc disorders, sleep disorders, stroke, Parkinson's and many other conditions. After careful evaluation and testing by a physician,  pain can be managed using medications or alternative pain management therapies, or combinations of these methods.  Dr. Nancy Mueller is a Neurologist who works closely with the specialists in her office to provide chiropractic care, acupuncture, physical therapy, and massage therapy in a coordinated and holistic approach to caring for her patients.  (by Judy Machecek)


The second part of the meeting was open discussion.  Members shared with the whole group and later in small clusters that spontaneously formed.  As usual, we stayed well passed the stated time of 4 PM.


Next weekend, the NJCFSA Fall Conference will be held.  Complete details are included again for your convenience.  Please consider attending.  If you need a ride please contact Anne Gilmartin. She and some other members have offered rides to those wishing to attend.   If you have not yet registered, please send your application and check today.  Also, call Nancy Visocki (201-439-0704) to ensure you will be on the list. 



Chest Online, and the URL http://www.chestjournal.org 

COPYRIGHT © 2005 by the American College of Chest Physicians.


Marcel A. Baltzan, MD*, Osama Elkhouli, MD, Laura Creti, PhD, Sally Bailes, PhD, Catherine Fichten, PhD, Norman Wolkove, MD and Eva Libman, PhD

Mount Sinai Hospital Center, Montreal, PQ, Canada

PURPOSE: Patients with chronic fatigue syndrome (CFS), as defined by Centers of Disease Control criteria, often have a potentially treatable sleep disorder. However, even when obstructive sleep apnea (OSA) is identified in these patients, improvement with treatment is not predictable. We sought to determine whether any parameters of the diagnostic or titration sleep study were associated with improvement in symptoms of CFS after a subsequent trial of home CPAP.

METHODS: We reviewed the clinical and polysomnographic (PSG) findings of 78 patients with CFS. Thirty-nine (50%) were found to have OSA and underwent a CPAP titration night. Thirty-seven pts subsequently agreed to a therapeutic CPAP trial lasting up to 6 months. They then rated their CFS symptoms as "improved" or "not-improved".

RESULTS: In the diagnostic PSG, patients with CFS who reported improvement to later CPAP had a higher mean arousal index 67.6 (70.1) vs. 26.1 (12.1) in those who did not improve (p = 0.037). The following table compares several PSG variables in patients who improved with the CPAP trial compared with those who did not. Each value represents the change between the diagnostic and CPAP titration nights (mean and standard deviation).

CONCLUSION: Patients with CFS and OSA are more likely to improve with CPAP if they have higher arousal indices in the diagnostic PSG and show improved sleep efficiency during CPAP titration. Changes in REM latency and stage 1 and 2 sleep may also predict improvement.

CLINICAL IMPLICATIONS: The above mentioned PSG variables may be clinically useful in predicting which patients with CFS and OSA are more likely to improve with CPAP use.

DISCLOSURE: Marcel Baltzan, None.

Diagnostic vs. Titration

Improvement with CPAP

No Improvement with CPAP

p Value

Change in Sleep Efficiency (%)

13.1 (27.8)

–9.6 (14.2)


Change in Latency to REM-sleep (min)

–40.8 (108)

48.9 (75.8)


Change in Stage 1 Sleep (%)

–4.8 (8.9)

2.9 (12.1)


Change in Stage 2 Sleep (%)

5.0 (10.3)

–7.5 (18.2).


Change in Apnea-hypopnea index (per hour)

–21.7 (50.7)

3.3 (19.5)


Helping Hand



*REMINDER* - NJCFSA Conference 


Please consider attending this conference.  It is an opportunity to hear some of the people who work so hard on our behalf.

New Directions in Research and Therapy in Chronic Fatigue Syndrome

DATE: Saturday, November 5, 2005       

SITE: Sheraton Conference Center EatontownNew Jersey

TIME: Noon to 5:00 PM                                                   

FEE: $30 per person (parking is free)

Conference Program


Noon1:00 p.m.  Registration & Exhibits


1:00 – 1:15 p.m.                   Introduction & Welcome


1:15 – 2:15 p.m.                   CFIDS and Diastolic Cardiomyopathy

Paul Cheney, MD, PhD, Director of The Cheney Clinic in Wilmington, North Carolina and pioneering clinical researcher in field of CFS.


2:15 – 3:00 p.m.                   Educating the Child with CFIDS

Shanon McQuown, Special Education Coach and author of recently published book “Harnessing the Wind: Chronic Fatigue Syndrome and My Son.”


3:00 – 3:15 p.m.                   Break – Light Refreshments


3:15 – 4:15 p.m.                   News Update on CFS and Related Disorders

Susan Levine, MD, FAAP, Board Certified Internist and Infectious Disease Specialist; CFS Clinician and Researcher, Private Practice, New York, NY.



4:15 – 5:00 p.m.                   Questions and Answers



Research (Part 2)


Chronic fatigue gene signs found

Scientists believe they have pinpointed biological markers of chronic fatigue syndrome which could help develop a test and treatment for the condition.

CFS, or ME, makes people feel extremely tired, and can cause weakness, headaches, and disrupted sleep.   Scientists, now based at St George's Hospital, London, found differences in the way genes are expressed in white blood cells of people with CFS/ME.  But others say the New Scientist findings may not explain all cases.  It is also due to be published in the Journal of Clinical Pathology.

The scientists say their findings fit with the understanding that a virus, such as Epstein-Barr, may trigger CFS/ME, because that illness might alter how genes are expressed.  CFS/ME often first appears as a flu-like illness, but does not then go away.


The researchers compared levels of gene expression in the white blood cells of 25 healthy people and 25 who had CFS using DNA chip technology.  They found differences in the behavior of 35 of the 9,522 genes they analyzed.  Further genetic testing showed 15 of the genes were up to four times more active in people with CFS, while one gene was less active.  Several genes the team pinpointed play important roles in mitochondria, the "powerhouse" of cells.

One of the products of these genes is EIF4G1, which is involved in the protein production in mitochondria.  EIF4G1 is hijacked by some viruses, so cells may compensate by increasing gene expression.  The genetic differences lead to changes in how blood proteins behave which could allow the development of a blood test for CFS, the team says.

Other genes are involved in regulating the immune system or playing important roles in nerve cells.  The team will now carry out further research on 1,000 CFS patients and healthy people.

Not 'made-up'

Dr Jonathan Kerr who led the research team, which is currently in the process of moving to St George's, said: "The involvement of such genes does seem to fit with the fact that these patients lack energy and suffer from fatigue."  He added the work could also potentially lead to a treatment for the condition.  "We have shown that a significant part of the pathogenesis resides in the white blood cells and in their activity.  It will open the door to development of pharmacological interventions."

Dr Russell Lane, a neurologist at Charing Cross Hospital, in London, said: "This exciting new work shows that some aspects of this complex illness may be understandable in molecular terms, and that CFS is not a 'made-up' illness."   Chris Clark, chief executive of Action on ME, told the BBC News website: "The prospect of having a diagnostic test is very encouraging because many people with ME can currently take well over a year to find out what is wrong with them."  Dr Neil Abbot of Merge, a charity which funds research into CFS/ME, said: "CFS/ME can have very different effects on patients.  "We're not looking at just one condition with a definitive patient group.  "So it might be hard to get a gene signature which works for everyone with CFS/ME."  But he added: "This research probably won't be the answer for everyone, but it is still very interesting."

Story from BBC NEWS:

Published: 2005/07/21
11:29:36 GMT



Next Meeting

The next scheduled meeting will be on Sunday November 20th.  We will have a discussion and provide information about the various CFS organizations in the US, their functions, purposes and differences.  If you were ever confused about which CFS organization does what, come join us!   Come also to meet others who share this illness.  It is a great way to share coping techniques.


This newsletter is intended for CFS patients in the area of this support group.  The purpose is to share information and support.  If you have questions about meetings please contact Group Leader Anne at annielaurie617@yahoo.com.  Subscription problems: Nancy Visocki at nvisocki@verizon.net. Editor: Pat LaRosa at pat@larosas.net.